The National Center for Biotechnology Information says most babies born with anencephaly live only a few days. The center says it occurs in 1 out of 10,000 births but the exact number is unknown because many of these pregnancies result in miscarriage.

Nickolas' grandmother, Sherri Kohut, tells KOAA-TV that she believes Nickolas came down with a virus. She says he had difficulty breathing Wednesday and eventually stopped. She says three attempts to revive him failed.

Relatives say Nickolas survived without special medical equipment but required several kinds of medicine.

Kohut says Nickolas taught his family how to love and about the strength of family. She recalls him laughing as he played among pumpkins recently.

"He was our hero because he showed the strength if I can do this anything can be done," Kohut told KOAA-TV. "He will always be remembered."

The exact cause of anencephaly is unknown, according to the National Institutes of Health, but possible causes include environmental toxins and low intake of folic acid by the mother during pregnancy.

The NIH says there is good evidence getting sufficient levels of folic acid could reduce chances of neural tube defects like anencephaly by 50 percent.